Living in a Complex World
Those of us who have adults with Autism in our lives are compellingly drawn to the edge of their complex worlds.
Kevin, my son, describes his world in his book Living in the Eye: Life with Autism. He portrays his life from the perspective of one living in the eye of a tornado.
‘Everything in the universe is composed of numbers, symbols, music and rhythm, which pulse around me in living colour,’ he writes. ‘When I first wake up, I lie in bed listening to the singing of birds and the whispering of the wind in the trees, pastel colours floating in peaceful tranquility.’
‘But the slightest anxious thought or feeling sets the colours whirling and when my emotions rise, the colours shout like noises in my head.’
It is humbling to recognize the fortitude required by an autistic adult (or child) to fend off relentless sensory assaults while, at the same time, frustrated by communication difficulties. Thank God Kevin is able to express his dreams and feelings through typing, often with the assistance of supported touch.
Kevin, like others with Autism disorder, has intellectual abilities at odds with his practical and social disabilities. He is determined to live an independent life while, at the same time, relying on others to help him do so. He wants to make decisions for himself but requires those close to him to listen by assisting with his communication devices.
In writing Living in the Eye, Kevin’s primary goal was to be an advocate for persons with disabilities. He wants people to look beyond physical disabilities and inappropriate behaviours into the souls of others, to recognize the feelings, longings and intellect within.
Kevin, moreover, has certainly influenced my writing. Autistic characters play roles in the novels, The Belvedere at Stone Gate and Enigma Club. The gifts and idiosyncrasies of Autism make tantalizing appearances in the historical fantasies, Bells of Prosper Station and Black Springs Abbey.
Although I cannot experience Kevin’s world of symbols, colours and auras, I witness firsthand the unpredictability of his emotional overflow: joy, anger, resignation, desolation. Like seasonal changes, they herald the promise of spring, heat of summer, colour of autumn, chill of winter.
In June, Kevin celebrated his 52nd birthday with family and friends. His genuine happiness that day was a welcome change from the darkness that has dominated his moods in the six months since his father’s death.
While in his brighter moods, he more fully appreciates the blessings around him. He values the companionship of Abby, his therapy dog. He welcomes visits from his family and the presence of his assistants. He enjoys zoom meetings with his friend Andrew from Guelph and other Bridges friends.
We, as a family, have been through many struggles and desperate times. There have been amazing successes and dismal failures. I have previously written about many of these in detail, and will not repeat them here. Of my four sons, Kevin has been dealt a tough hand. He has often railed against it, but is usually reconciled to it. His patience and courage are remarkable.
Kevin is anticipating our move to a downtown apartment building being built adjacent to a retirement village. Supplemental services from the retirement village can be acquired as needed. His familiar assistants will accompany him, most of them from the Victoria Order of Nurses.
The apartment seems an ideal place for an autistic man, his therapy dog and aging mother to settle into. Kevin recognizes it as a logical next step in a meaningful life. Perhaps he will remain here indefinitely, maybe in a smaller unit. His parish community is here, and his brothers nearby. The VON would become increasingly involved, and St. Francis Advocates on hand for support.
In this complex world, we can plan and plot, but God alone divines the future.
Gloria Pearson-Vasey – Storyteller https://www.gloriapearsonvasey.com
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